My latest CT scan results

[Feelingblessed2013]

Had my CT scan this past Thursday, results posted this morning, I see my oncologist tomorrow to discuss the results.

This is what the report says:

There is a pleural-based nodule in the posterior segment of the right upper lobe measuring 1.1 x 0.6

centimeters. There are no other pulmonary nodules or abnormalities of the parenchyma. There is no mediastinal or hilar mass or lymphadenopathy. There are no abnormalities of the chest wall.

Impression: Status post left upper lobectomy with no pathology in the residual left lung.

Right upper lobe pulmonary nodule which has slightly increased in size. On the previous CT scan of the

chest from December 8, 2017 it measures 7 mm. It presently measures 11 mm. On the more remote CTA of the chest from January 31, 2017 it was barely visualized measuring approximately 2 mm. This should be considered to be a malignant metastatic nodules until proven otherwise.

A follow-up PET scan may be helpful in this regard.

So it looks like the cancer is most likely back.

[JeanE41]

Hi KatherineK. I'm sorry to hear about your scan results. Being in the same situation with a slow growing nodule I understand your concern. I hope your oncologist has a good treatment plan for you. One question I have learned to ask is if this was you what would you do? That personalizes the situation for him or her. I think that approach helped my oncologist see things in a different light and instead of saying he is not concerned (which he did for a time) start to be realistic and talk about the options available. Right now I remain in a holding pattern, but am sure that the next scan will determine what comes next. If you do not like what your oncologist is telling you, do seek a second opinion. Wishing that your oncology visit goes well tomorrow.

Jean

[Feelingblessed2013 in reply to JeanE41]

Thank you for your kind words and advice. I hate this, the waiting is the worst. When I found out in December that they had seen a small (2 mm) nodule in January 2017 and never said anything to me I was a bit angry, but after the 3 month wait I just went through I'm glad they didn't say anything last January.

How long have you been the holding pattern?

I have a feeling mine has increased it's growth rate, took it 11 months to grow 5 mm, but only 3 months to grow 4 more. The radiologist recommended a PET scan, so that will probably be the next step.

I just want to get through tomorrow.

I had been checking on-line for the CT results to post twice a day (at least) since Thursday night, now that it posted and I read it, I kinda wish I hadn't.

[JeanE41 in reply to Feelingblessed2013]

When I questioned the oncologist why the nodule was not originally noticed, he said it was too small to see until it grew and they looked back. Then they knew exactly where to look. I have been in a holding pattern for over a year. My original tumor was adenocarcinoma. This tumor has been growing only a couple of millimeters every 4 months and has just made it to one centimeter. Still very small. The wait is nerve wracking to say the least. Your original tumor was different from mine, so your treatment options may be different. Let me know how things go tomorrow.

[Feelingblessed2013 in reply to JeanE41]

I am sorry that you are going through this.

I will let you know what the Dr says tomorrow.

[Feelingblessed2013 in reply to JeanE41]

If yours is at 1 centimeter, can't they biopsy now?

[JeanE41 in reply to Feelingblessed2013]

It is in a place that makes it very dangerous to biopsy. Will request a liquid biopsy before starting any treatment. My previous tumor had the EGFR mutation which would show up if this tumor is the same.

[Feelingblessed2013 in reply to JeanE41]

Please let me know how you are doing.

[Feelingblessed2013 in reply to JeanE41]

Doctor is ordering a brain MRI (just in case), a PET scan, and sending me to a thoracic surgeon.

How are you doing?

[JeanE41 in reply to Feelingblessed2013]

So far I am doing well. Keeping busy so I don't dwell on the what ifs. I get short of breath on exertion which seems to be getting slowly worse especially when the air quality is not good, but can still function pretty normally. My next scan is in June, so I will know more then.

It sounds as though you are fortunate to have an oncologist with empathy. My oncologist also has empathy and is a good communicator. He is also very knowledgeable, so a true find.

Let us know how your pet scan and mri turn out. It sounds as though you have a good team behind you.

[Feelingblessed2013 in reply to JeanE41]

I will let you know about PET scan. Please let me know the results of your next scan.

[PegD]

A PET sounds like a good idea, but waiting is hard! Please let us know what your doc says today. Wishing you well.

[Feelingblessed2013 in reply to PegD]

Doc is ordering a PET scan, an MRI of my head (to make sure my brain is still there), actually it is a precaution because of the headaches that I think are from the herniated disk in my neck, and he is sending me to a thoracic surgeon.

[JeanE41]

I like your oncologist. He or she is on the ball and being proactive. Keep us informed. It sounds as though your doctor is looking at a cure.

[Feelingblessed2013 in reply to JeanE41]

He's a he, and I like him to, except for yesterday in his office when he made me cry. We had discussed the spot and the fact that he doesn't like how it looks, scheduling an MRI, a PET scan, and seeing the thoracic surgeon, and then he held my hands looked into my eyes and said "but how are YOU doing?" that's when I lost it.

Anyway, my MRI is 3/23 (next Friday) and PET scan is 3/26 (Monday). I am hoping to see the thoracic surgeon that week to get the results. If not, I will call my oncologist.

[Denzie Moderator Volunteer]

So sorry to learn about your possible progression. Do insist that they do a new mutation test panel on any biopsy. And please update us when you have the opportunity.

[Feelingblessed2013 in reply to Denzie]

They didn't do a mutation test the first time, all they did was a biopsy to verify cancer. I had never heard of mutation tests until I joined this group. I will definitely ask about doing it this time. I will keep you updated.

[Denzie Moderator Volunteer in reply to Feelingblessed2013]

Your reply set off some alarms but after looking back through your old threads I see you had squamous cell lung cancer. Until the last couple of months they did not test squamous as there are no known targetable mutations in squamous. Today they can test for and Use Keytruda (pembrolizumab) if your cancer expresses the PDL1 protein. If it expresses less than 50% they can use Opdivo (Nivolumab) which was approved for squamous before approval for adenocarcinoma

Please let us know what the PET scan results are and anything new you learn.

[Feelingblessed2013 in reply to Denzie]

I didn't think they did back then, but I wasn't positive. Things have changed so much in the last few years.

Thank you for the info, I will keep you posted. I am hoping to have a "game plan" in place by the month.

Kate

[phyllis_liberty in reply to Feelingblessed2013]

Hi sweetheart.

I'm sorry to hear about the progression. But you have GOT THIS! I think, from.your posts, you're a strong lady... and you will beat this thing. I'll keep you in my thoughts, and please, stay in touch. I'm here for you, even if I'm not posting much.

Hugs...BIG ones!!! 💗👍

[Feelingblessed2013 in reply to phyllis_liberty]

Thank you. You please stay in touch as well.

[Feelingblessed2013]

UPDATE: Saw thoracic surgeon today, the bad news it is definitely cancer. The good news is that it is still only in the right upper lobe. He wants a PFT and cardiac clearance. If both look good, surgery probably by mid April. If not, plan B will be radiation treatments. Cardiologist is next Tuesday, PFT is next Wednesday. Now, I wait....

[phyllis_liberty in reply to Feelingblessed2013]

I messaged you. I see my question was answered here. I'm very sorry to hear this. Please let me know of any news.

Hugs!!! 💗💗

[Feelingblessed2013 in reply to phyllis_liberty]

I saw your message, and replied, before I saw this.

[FtB_Peggy]

Katherine, thank you so much for the update, we have been wondering. So very hard to wait. Tough news blended with good news...life is such a crazy mix. Hugs to you and please continue the conversation - we want to hear how you are!!!

[Feelingblessed2013 in reply to FtB_Peggy]

Peggy, I will keep everyone updated.

[Feelingblessed2013]

ANOTHER UPDATE: No surgery date yet. Cardiologist ordered a stress test because my last one was 5 years ago. Test was yesterday, saw doc today, he said "the test showed a slight anomaly so you need to have an angiogram to make sure there is no blockage". So now I wait for the call to get that scheduled, he said within the next couple of days, but it's an entirely different hospital doing it, so who knows.

On top off all this crap, we found out yesterday that my husband has aflutter, his heart rate hasn't dropped below 100 bpm in over a month, so he needs another ablation. Still waiting on that date as well.

[FtB_Peggy]

Katherine,

I am so sorry, argh!!! I will hold you and your husband in my prayers...the good news is both of your issues were found, and you are getting great medical care...please keep us updated

[Feelingblessed2013]

Thank you.

[SusieJo1948]

KatherineK I,m sorry to hear that hopefully treatments will get rid of it. i,ll be thinking of you. Let us know,if you need to talk or rant or cry. i,m here if you need to talk. i,ll be hear for you so will the others its a great bunch love susiejo1948

[Feelingblessed2013 in reply to SusieJo1948]

Thank you. I will keep in touch, you do the same please. I would like to know how you are doing.

[SusieJo1948]

katherine i,ll definitly keep in touch. love susiejo

[Feelingblessed2013]

UPDATE: I had surgery this past Monday, they had to remove the upper right lobe, biopsy showed squamous cell lung cancer so I am now down to 3 . Got home from the hospital Thursday, but they had to send me home on oxygen until I see Dr. on 5/11. In the hospital they had me walk the halls without the supplemental oxygen to see if I could do so safely, I could not, my O2 level went into the low 80's. He will reevaluate me to see if I can go off of it (I hope I can). I have noticed that the more I walk around the higher my heart rate and the lower my O2. At one point it dropped to 88, but when I sat down for a few minutes, it went back up.

I will let you know what the doctor says.

[FtB_Peggy]

Katherine, thank you for the update. It is all so hard. Please be patient with your body as it adjusts to this big change. Hugs.